When your spouse has Alzheimer’s disease, it changes your marriage.
“My husband is really my child now,” says Linda Waddington, an Alzheimer’s caregiver who lives in Rotterdam.
“I have to tell him everything. I put the toothpaste on his toothbrush. I make sure he buttons all his buttons. He doesn’t remember from one minute to the other. He’s got the mind of a 4-year-old.”
Caregivers Conference 2013
WHEN: 8 a.m. to 4 p.m. Wednesday, May 22
WHERE: Albany Marriott, 189 Wolf Road, Colonie
HOW MUCH: $30 for family caregivers and students, $85 for professionals. Fee includes buffet lunch.
MORE INFO: Alzheimer’s Association of Northeastern New York, www.alz.org/northeasternny or 867-4999
Frank Waddington, a 72-year-old retired lab technician and longtime musician and conductor with the Colonie Town Band, was diagnosed with Alzheimer’s eight years ago, but started having memory problems when he was 62. The disease has progressed very slowly, but in the past two years, daily life for Linda, who is also 72, has become more difficult.
She is also dealing with grief.
“We’re still very close. But it’s like somebody died. I’ve lost my husband. My best friend,” she says.
And yet Linda, a retired executive secretary, is determined to keep going. She wants to learn all she can about Alzheimer’s and how to take care of Frank. She tries to take care of herself, too.
“I’ve taken this on like a bull in a china shop,” she says. “I keep moving along because I want him to have the best care possible.”
On May 22, Linda will be spending the day at Caregivers Conference 2013, presented by the Alzheimer’s Association of Northeastern New York.
“This is probably my fourth or fifth year. You learn new information all the time,” she says.
“Caregivers need education. They need support. And they need a break,” says Elizabeth Smith-Boivin, executive director of the Northeastern chapter, which serves 17 counties in New York.
“If they understand the disease, there is an understanding of how to communicate with persons with Alzheimer’s disease. When we understand the disease, we understand how people with Alzheimer’s disease get agitated or irritable. If we understand the disease, we understand why they ask us the same question over and over again, and we can be more patient,” Smith-Boivin says.
This is the 17th year the Northeastern chapter has organized the conference, which annually attracts about 500 caregivers. While the majority of the attendees are spouses or adult children of Alzheimer’s patients, about 20 percent are professionals, people who have jobs caring for patients.
“This is our day devoted to caregivers and their needs,” Smith-Boivin says. “No one will be turned away.” While registration officially closes on Wednesday, “we’ll take a last-minute walk-in,” she says.
If caregivers need someone to watch their loved one while they are at the conference, the chapter will arrange adult daycare near the hotel or send a trained volunteer to their home.
While her husband is in daycare, Linda plans to go to two workshops, “The Long Goodbye: Living With Anticipatory Grief,” and “Intimacy and Alzheimer’s Disease,” which is presented by Stephen Hume, an early onset Alzheimer’s patient, and Hume’s partner.
Eight different workshops are offered, and each participant picks two, one in the morning and one in the afternoon.
“We always have something that focuses on behaviors,” says Smith-Boivin. “Every couple of years, we make sure we include something on the legal and financial planning, so that’s coming back this year.”
At every conference, there are two keynote speakers, one who talks about Alzheimer’s research and a motivational speaker.
Dean M. Hartley, a researcher from the Alzheimer’s Association’s science division, will report on drugs and clinical trials.
“There’s always progress,” says Smith-Boivin. “Sadly, we thought that we would have more progress by now. We still have a very long way to go. However, some of the underlying research that has to happen in order to see progress, has happened. We have probably just over 50 medications currently in clinical trials. We’re hopeful about all of them.”
Alan Arnette, who lost his mother and two aunts to Alzheimer’s, is this year’s motivational speaker. In 2011, when Arnette was 58, he raised funds for research by climbing the highest mountain on each continent.
“We try to put a little bit of light and hope into somebody’s day,” Smith-Boivin says.
When caregivers take a coffee break, they can visit a room where 50 exhibitors will talk to them about their goods and services, from durable medical equipment and books, to home health agencies and nursing homes.
More awareness of Alzheimer’s would help both caregivers and patients, and is desperately needed, Smith-Boivin says.
Many people don’t know how to approach someone with a mental condition, and sometimes avoid them.
“I honestly believe that there are a lot of good people out there who really do want to help, and they are just a little afraid about how to communicate. They are just not sure of what to do,” she says.
“People with Alzheimer’s disease lose the ability to initiate conversation. But that doesn’t mean for a moment that they don’t enjoy conversation.”
Because patients often keep their memories of the past for a long time, she suggests starting a conversation about “the good old days.”
How to help
Family members, friends and neighbors often ask her how they can help the caregiver.
“Stop over with a meal. Offer to drop something off at the dry cleaners. Ask if they need something because you are running out to Price Chopper,” Smith-Boivin says.
“Take a person with Alzheimer’s disease for a walk or for a pet visit or out to lunch.”
Linda Waddington gets a welcome break when volunteers from St. John the Evangelist Church come to her condo and stay with Frank so she can go out for a while. A neighbor often invites Frank to join her when she takes her dog for a walk.
But Linda has also observed the stigma that Alzheimer’s patients can face.
“It’s so sad. People kind of shun them,” she says.
Linda says a simple hello or an arm around Frank’s shoulder would be helpful.
“He’s an affectionate man. He loves to talk. Give him a hug. He loves to hug people.”
Because of his lovable nature, Linda even has a special nickname for Frank.
“I call him ‘Huggie Bear,’ ” she says.